Allira’s NF Story

Allira’s NF Story

Until now, the concept of NF has been a vague one for much of what Allira remembers. Now seventeen and entering adulthood, Allira is only just coming to a full understanding of her diagnosis – the symptoms, the potential complications, and the uncertainty.

The first and only person in her family to have NF1, Allira’s diagnosis sent a shock through her family as they struggled to cope with the change.

“It took a bit of a toll on my parents, mainly due to the rarity of NF and the struggle to find specialist doctors,” says Allira who, having grown up in remote Kununurra located in far northern Western Australia, knows all too well about the hardships of being isolated from NF support and services.

“The running around and constant appointments and check-ups were definitely a hassle for us.”

Through her NF Allira has also battled with poor coordination and an optic nerve tumour which she fears may turn cancerous, but she acknowledges that despite her challenges she is one of the fortunate ones.

“There are so many articles and stories out there about people with NF which got worse as they got older, and of course I read them all,” says Allira.

“I feel scared and lost, but thankfully NF doesn’t have a massive effect on my day-to-day life. One positive experience is that I’m different to everyone else!”

Allira has fears for the future – that her condition may take a turn for the worse, that she may suddenly no longer be able to complete her day-to-day activities – but she is proud to be different and is working towards building a bright and positive future for herself, and she credits her high school teachers for their support and encouragement.

“They believed in me and knew that I had what it took no matter what condition I had,” says Allira who, after spending her final three years of high school at boarding school, is now working full time as a Pre-Primary Teacher’s Assistant in her hometown of Kununurra and is studying a Certificate III in Education Support at TAFE.

“There are so many other people out there who will support you and help you,” says Allira.

“There are plenty of resources to keep you informed. You just have to stay strong.”

While having NF1 might make Allira different from the rest, one might argue it’s actually her optimism and can-do attitude that sets her apart.